Involvement of children and young people in the conduct of health research: A rapid umbrella review

Abstract Background Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. Aims This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. Methods We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. Results The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts‐based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. Conclusion Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. Patient/Public Contribution This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

We defined the following terms: • Children: All persons aged 12 and under. 16CYP: All persons under the age of 25, inclusive of children (<18 years), 10 adolescents (10-19 years) 17 and youth (15-24 years). 18'Representatives' of CYP: Any persons involved alongside CYP who have lived experience or training in caring for CYP.This could include parents/guardians, youth services, teachers, health practitioners, and other relevant experts.
• Involvement: research 'carried out 'with' or 'by' members of the public (in this case CYP) rather than 'to', 'about' or 'for' them'. 19is differs from 'Participation', 'where people take part in a research study', 19 except in circumstances where participative activities were designed to give the CYP voice or agency in research (e.g., focus groups for CYP to voice perspectives, photovoice to enable CYP to document their own lived experience).
• Health research: Research related to physical and mental health and wellbeing (including observational and interventional research).

| Search strategy
The search strategy was developed by the authors with an experienced research librarian.Searches were performed in Ovid MEDLINE, Ovid Embase and PubMed (National Library of Medicine) databases in August 2023.Search terms were grouped based on population (CYP), setting (health research), action (involvement or collaboration), impact (research conduct), and literature type (reviews).The full search is presented in Appendix S1.Additional reviews known by the authors were also included if deemed eligible.
Citations were downloaded into EndNote (Clarivate Analytics) and saved in the Systematic Review Accelerator (SRA). 20Duplicate reviews were removed using the SRA Deduplicator (with each duplicate manually verified).

| Selection of reviews
Two authors (K. A. W. and J. C.) undertook the title and abstract screening and full-text review.Review was conducted independently and blinded.The SRA Screenatron tool was used to aid screening. 20

| Inclusion criteria
Searches were limited to reviews only (including systematic reviews, scoping reviews and other literature reviews).No date or language restrictions were applied.Reviews were considered relevant if they reported on (1) involvement of CYP in (2) the conduct of (3) health research.Involvement in personal clinical care and public health initiatives, policies or guidelines were not included unless there was an element of research incorporated (e.g., evaluation and dissemination of results).Reviews that included adults (>24 years) were only eligible if CYP (≤24) was the primary focus.

| Exclusion criteria
Reviews/studies were excluded if (1) CYP (and/or their representatives) were involved only as research participants, (2) there was sufficient detail to indicate that involvement was 'tokenistic' (Tokenism, in this context, is defined as the practice of making perfunctory or symbolic efforts to involve CYP in the conduct of health research [modified from Hahn et al. 21 ].For example, an attempt at PPIE with CYP could be tokenistic if their input is not fairly considered, unnecessarily limited or highly controlled by adults, whether intentional or not) and (3) insufficient description of the methods and/or nature of involvement was provided (e.g., necessary details could not be extracted).Due to the rapid nature of this umbrella review, reviews were also excluded if the full text was not accessible through the Royal Children's Hospital or the University of Melbourne libraries.

| Data extraction and synthesis
Data extraction included reference (author, year), review type, setting and objectives, data available at the individual source study level (region, quantity and age of those involved, the stage, method, and level of involvement), as well as data available at the review level (benefits, challenges and facilitators of involvement).
Two authors (K. A. W. and J. C.) conducted extraction and synthesis independently, with data checked for accuracy by the alternate reviewer.A combined approach of content (individual source study variables) and thematic (review level variables) analysis was used to overcome heterogeneity in reporting of results.Data were coded and categorised to enable comparison and analysed in whole (i.e., 'CYP and/or their representatives') and age-defined subgroups, 'CYP alone' (i.e., ≤24 years of age only, no representatives) and 'children alone' (i.e., ≤12 years of age only, no representatives).
An adapted taxonomy proposed by Haijes and van Thiel 22 was used to capture method types for involvement.This involves categorisation of participatory methods into four groups (verbal, written, visual and active), as well as 'combination' which further captures where multiple of these methods were used in conjunction.

Similarly, a modified version of the International Association of Public
Participation (IAP2) Public Participation Spectrum was used to infer the 'level of involvement' reported for studies within reviews (Figure 1). 23The IAP2 captures the depth and meaningfulness of involvement across a spectrum.Data were only included if sufficient detail was reported and/or an existing model was used by reviews to assess level of involvement.The 'observation' category of Haijes and van Thiel 22 and the 'inform' level of IAP2 were not considered meaningful involvement in the context of this review and were therefore not included in the results.Data were extracted from reviews for original research studies only.Further information was sought from source studies if required and available.Primary publication overlap was assessed using a citation matrix, 15 and the 'corrected covered area' (CCA), a measure of the overlap within the reviews of an umbrella review, was calculated as 0.49%.Pieper et al. 25 consider a CCA value lower than 5 as a slight overlap, therefore we suggest that a CCA < 0.5% indicates that limited biasing of results is likely to have occurred as a result of the minimal overlap.Therefore, duplicate primary publications across reviews were not removed; however, data were consolidated in instances where multiple source articles were referenced for the same study within a review.

| Quality assessment
Two authors (K. A. W. and J. C.) undertook Risk of Bias assessment for included systematic reviews (n = 12) using the ROBIS Tool as this was determined most appropriate for this umbrella review. 26There was no known established tool for appraising the quality of scoping reviews.However, the PRISMA extension for scoping reviews (PRISMA-ScR) checklist was used to determine whether included scoping reviews (n = 10) adhered to essential reporting items. 27maining reviews (n = 4) were not appraised due to the absence of an appropriate tool.
Finally, disagreement during screening and selection, data extraction, and risk of bias assessment were resolved by consensus between two authors (K. A. W. and J. C.).

| Search and screening results
The search yielded 3471 articles, of which 2387 were screened after removing duplicates.A further 2294 were removed during title/abstract screening.Of the 91 full-text reviews available, 24 met the inclusion criteria and an additional 2 eligible reviews were identified by hand-searching during preliminary scoping of the literature.In total, 26 reviews were included in this rapid umbrella review.The full search and screening process is presented in
The 26 reviews reported on 671 uniquely relevant studies of varying designs, with an average of 26 studies per review (range of 5-114).Together, the reviews screened for articles published from all time to 2023.However, most were published within the last 10 (n = 427; 64%) to 20 years (228; 34%) (Table 2).
The number of CYP involved was only available for 369 (58%) studies, with a median of 17 CYP per study.The age range for CYP involved was available for 462 (73%) studies, covering children ≤12 (n = 297; 64%), children < 18 (n = 437; 95%), adolescents (10-19 years; n = 441; 95%) and youth (15-24    The definition of involvement at each stage is presented in Figure 3. Studies most frequently described involvement of CYP (and/or their representatives) in data collection (n = 336; 72%) and research design (n = 246; 52%).For the purpose of this review, 'data collection' refers to instances whereby CYP were involved in building data collection tools (e.g., developing a survey), conducting data collection (e.g., interviewing their peers) or were supported to have meaningful control over the data collection process (e.g., participative activities that enabled CYP voice and expression).Only 11 (2%) studies described involvement in research funding and 1 (0.2%) in data access and sharing.
Over half (n = 280; 60%) the studies reported involvement in multiple research stages.
A smaller number of studies reported on the involvement of children aged 12 and under only (n = 28; 6%).Children (≤12 years old, no representatives) were more commonly involved in data collection (n = 26; 93%) and analysis (n = 14; 50%), less in research design (n = 11; 39%) and dissemination and translation (n = 10; 36%) and not at all in funding or data access and sharing (n = 0; 0%).

| Research methods
Methods of involvement were available for 600 (89%) of the studies (Figure 4), with two thirds (n = 397; 66%) describing the method used for CYP alone (i.e., ≤24 years of age only; no representatives).
Complete data for the method of involvement is tabulated in Appendix S2.
Methods of involvement for CYP alone were similar, largely facilitated through verbal methods (n = 300; 76%), such as focus groups (n = 162; 41%) and interviews (n = 118; 30%); visual methods Search and screening process.Adapted from the Preferred Reporting Items for Systematic Reviews and Meta-Analysis 2020 flow diagram template.

| Level of involvement
A modified version of the IAP2 spectrum was used to infer 'level of involvement' (Figure 1).This was only available for 259 (39%) of the studies (Figure 5), with two thirds (n = 160; 62%) describing the level of involvement employed for CYP alone (i.e., ≤24 years of age only; no representatives).

| Benefits of involvement in research
A range of benefits were identified relating to involvement of CYP in research.Benefits of involvement were reported to positively impact the research study (25 reviews [96%]; Figure 6A) as well as the CYP involved in the research (22 reviews [85%]; Figure 6B).
T A B L E 2 Summary of source studies.3.

| Risk of bias/quality assessment
Overall, half of the systematic reviews were assessed as low risk of bias (n = 6) and half as high risk (n = 6; 50%) using the ROBIS tool (Appendix S3).It is worth noting that some risk of bias may have been attributed to incompatibility in select assessment domains due to the qualitative nature of the reviews included in this umbrella review.
Comparison of scoping reviews against the PRISMA-ScR checklist demonstrated that all adhered to most of the essential reporting items.The main omission was failure to register a review protocol and/or to conduct and report results of critical appraisal.All scoping reviews cited the methodological framework outlined by Arksey and O'Malley 119 whereby conduct of appraisal is reportedly not required.
Together, this was interpreted as overall high quality for the scoping review included in this umbrella review.

| Principal findings
This umbrella review explored when, how and to what extent CYP are involved in the conduct of health research, as well as the benefits, challenges and facilitators of involvement identified to date.

| Involvement must be flexible and accessible to suit CYP at all research stages
This umbrella review found that CYP (and/or their representatives) were involved in all stages of research, although to varying degrees.and funding decisions.This may not be surprising given the inherently technical aspects of these research processes.Furthermore, it is not always feasible to accommodate PPIE activities before obtaining funding. 2,120,1213][124][125] Consideration of with whom and how one's data are used and shared may also be of importance to CYP.Therefore, the involvement of CYP in data governance is an area that could benefit from greater attention.
The findings indicated that visual and active methods were more commonly used in studies involving CYP alone, rather than with their representatives.These methods tend to be less structured and more creative in nature, and therefore are more engaging for CYP and accommodate alternative modes of expression.Of the studies that reported on age of CYP, very few described involvement of only children ≤12.It is possible that this reflects barriers to planning and implementing projects involving younger children.,102,103 Another confounding factor is how involvement of younger children is reported within the literature.5  Although studies often did not separate methodology across differing age groups, results suggested that active methods, such as role play or puppetry, were more likely to be used with children ≤ 12 than all CYP combined.Further research is needed to determine the extent to which methods need to be adapted to suit the age and developmental levels of those involved.
One emerging technique used for involvement of CYP was photovoice.Photovoice is a visual approach to research which allows an individual to document their lives and experiences through creative media. 73It helps to facilitate and remove barriers to communication and improve impact and translatability of findings through reflection. 126This method can be useful to support involvement of CYP who are unable to verbalise or directly express their experiences and perspectives. 22,73,110is is one example of how novel approaches can accommodate CYP with different needs and abilities.Bailey et al. 96 also highlighted the importance of flexible and accessible methods to enable involvement of CYP with disabilities as partners in research, and Racine et al. 13 discussed strategies to address system barriers for CYP with history of maltreatment.

| Researchers work with CYP at varying levels of involvement
This review found that researchers mostly 'consulted', 'involved' and 'collaborated' with CYP; however, very few 'empowered' CYP.Based T A B L E 3 Barriers, challenges and associated facilitators for involvement of CYP.
Barriers and challenges (N; %) Facilitators (summarised from reviews and extended literature) Research commitment (21; 84%) • Limited resources and experience • Time constraints • Institutional and ethical considerations and restrictions Plan for youth involvement as early as possible in the research development process. 35,76,108ecure funding with realistic expectations of resource and time requirements. 96Prepare for institutional and ethical considerations and restrictions, particularly where youth involvement requires specific consent and support needs. 13,72,76,96,101,107,108,113,116,117Researchers should have experience or seek training in best-practice engagement. 13,72,76,96,101,107,108,113,116,117lternatively, experts can be outsourced to lead and guide youth involvement in research. 9ust and partnership (21; 84%) • Power differentials and distrust • Vulnerability and exploitation Minimise power imbalances between youth and researchers.Be receptive and respectful to all input provided by CYP. 97,113Build genuine, personal relationships and rapport with youth. 75,77,95,99oster symbiotic partnerships through equality, trust and gratitude. 9,102,110Establish supportive environments (e.g., settings that are familiar like community or school locations) and practice honest and clear, two-way communication. 13,56,95aningful Involvement (20; 80%) • Tokenism and ineffective collaboration • Misinformation and bias (infantilisation and assumed incompetence) Involve CYP in all stages of research and facilitate true co-production and partnership wherever possible. 97,115Empower CYP to share responsibility and decision-making in research. 9Offer training and mentorship to CYP to enhance their opportunities and abilities to contribute meaningfully to research. 5,13,114Allow dedicated time for reflection and evaluation to learn and adapt future experiences and approaches. 5,13,114cessibility for CYP (16; 64%) • Financial constraints • Scheduling and availability

• Location and transportation
Flexibility is required to accommodate the needs of CYP.Use of hybrid approaches (face-to-face, online, social media) and suitable timing, frequency and location. 9,13,35,76,77,87,95,96,99,101,115nderstand that CYP have their own lives and accept fluctuation in ability and willingness to be involved. 97,107,108,115Ensure compensation is adequate to not only reimburse expenses (travel, parking, food, accommodation) but also renumerate for time and skills. 13,75,77,96,104,113,115,117intenance of Engagement (16; 64%) Allow reasonable time and effort to design engaging tasks and activities for CYP. 22Ensure approaches are age appropriate, language accessible and tailored to the interests of those involved. 5,73,104,110Encourage CYP to guide their own experiences. 5,9,96,107,109,113Create safe spaces, frequent breaks and incorporate unrelated socialisation activities. 104,115Give back to CYP by assisting with skill attainment and offering new experiences and opportunities. 75,86,99,107,113rovide regular feedback on the impact of their contributions and fair recognition of their input to the research. 75,86,99,107,113cruitment (12; 48%) + representation (10; 40%) • Small sample size and attrition • Lack of diversity and Group polarisation Ensure recruitment efforts yield a sufficient number of CYP to maintain sample size and account for attrition over time. 13,100,115Expanded eligibility and/or targeted recruitment strategies can be useful, 95 as well as leveraging pre-established relationships and partner organisations. 100 Conflict navigation (12; 48%) Set and manage expectations with CYP from the beginning. 5,22,35,72,76,87,115,118Formal/informal agreements or memorandums of understanding can help to establish shared purpose and responsibilities. 112Consider nominating a third-party liaison to mediate discussions. 13Demonstrate how all input has been considered and be transparent with any feasibility barriers along the way. 9,107Gatekeepers of CYP (e.g., parents/guardians, teachers, carers, etc.) must be kept informed and/or involved with their own separate role. 9,72,87,107It is important to establish clear boundaries to prevent adults from dominating involvement. 9,107breviation: CYP, children and young people.
on our modified IAP2 spectrum, this means that the feedback of CYP was sought and considered, that they worked alongside researchers in decision-making, and that researchers shared responsibility with them.It is important to note that this umbrella review did not consider the lower 'Inform' level as meaningful involvement, and therefore did not comprehensively search and synthesise evidence of this level in the literature.We suspect that tokenistic involvement of CYP may be prevalent, particularly amongst older research when evidence and support to develop appropriate involvement approaches may have been more limited.In reality, tokenism can be unintentional and difficult to detect, in that despite best efforts, researchers might lack the resources and expertise to ensure that involvement is truly meaningful and influential. 21,127wer levels of involvement ('consult' and 'involve') are likely more prevalent due to barriers associated with higher levels ('collaborate' and 'empower').There may be lack of expertise in research teams, as well as financial and resource burdens associated with the conduct of successful and meaningful PPIE, particularly where collaboration opportunities are ongoing such as coresearcher roles. 72,75,116,120In general, higher levels of involvement also require more power-sharing, which can be challenging in any PPIE setting as it requires experts to relinquish some control of their research in favour of collaboration. 72,103,105,120This often coincides with the unsubstantiated view that CYP do not have the maturity or competence to contribute value to research, particularly those <18 years of age. 117,121Despite this, the literature demonstrates a rising commitment towards research that fosters true and equal partnership with CYP, with slightly elevated proportions of the higher levels of involvement ('involve', 'collaborate' and 'empower') for CYP alone.
Research collaboration with CYP is increasingly more popular, such as the formation of advisory groups and committees guiding the decision-making process for many of the research stages. 72,75,109ilst still the minority, there were studies described in the reviews which demonstrated research empowerment with CYP. 9,72,99,101,103,104,107In most cases, this involved them leading their own research, or having an integrated role within the research project whereby youth-led decisions and input was not overruled by adults.
Unfortunately, the level of involvement was only able to be inferred for just over one-third of the studies included in the reviews.
As such, it is possible that the findings described in this umbrella review may not accurately reflect the levels of involvement across all research.

|
There is shared understanding of the benefits, challenges and facilitators for involvement of CYP Almost all the reviews included in this umbrella review reported that involvement of CYP was beneficial in improving the relevancy of the research.It was also apparent that the contributions of CYP to the materials and methods of research, such as recruitment and data collection tools, can greatly benefit the completeness and quality of research results. 96,99,108,128Facilitating meaningful involvement also helps to build trust between the community, researchers and policymakers, and together with the above benefits, enhances the dissemination and translatability of findings. 9,104,108,128P also benefit from their involvement in the conduct of health research.The evidence suggests that there is an element of social empowerment that comes with having a say in matters that affect them. 9,49,104,112,114,115,121This seems of particular importance to CYP whom historically have not had a voice or opportunity to advocate for themselves in research and other adult-powered settings. 13,73,121Furthermore, fair and successful involvement of CYP is often centred around giving back, such as through financial renumeration or attainment of skills and experience as appropriate for the age and developmental stage. 72,75,86,96,115,116spite substantial benefits, there were well-recognised challenges to involvement of CYP in the conduct of health research such as those associated with time, costs, power imbalance, trust, meaningfulness and accessibility.However, the literature provided helpful suggestions to overcome hurdles and facilitate better involvement.The overarching recommendation was for researchers to plan adequately and be open minded towards involvement of CYP.
Effort is required to ensure that involvement is accessible, engaging, and meaningful for both CYP and researchers.Involvement must not be tokenised; expectations should be managed from the beginning, and feedback provided regularly.Establishing respectful and powerbalanced relationships with CYP is one of the first steps towards successful involvement, as well as taking care to navigate conflicts with gatekeepers such as parents/caregivers.

Standards and best practices for involvement of CYP in research
are emerging.There are some published guides for PPIE in research, including frameworks for reporting, monitoring and evaluating involvement 24,89,[129][130][131][132] and a toolkit specifically for children's participation. 133However, most research studies have not systematically evaluated the impact of involvement and types of strategies employed.3][114][115] It is important that researchers begin to incorporate evaluation into their PPIE planning so that outcomes can be assessed, and methods of involvement verified for their effectiveness.

| STRENGTHS AND LIMITATIONS
To our knowledge, this is the first umbrella review on when, how and to what extent CYP are involved in the conduct of health research and fills a critical gap by providing a complete overview of the current landscape in this area.Our search strategy was designed to cover the breadth of the literature while maintaining sensitivity and specificity.
However, there is a recognised difficulty in searching for relevant literature on this topic. 9,95,96,101,102,107,108,112,114,115It is therefore plausible that included reviews may not have captured all relevant source articles.Furthermore, a lack of standardised terminology WYATT ET AL.
| 13 of 18 imposes a level of subjective interpretation on some findings. 104,107,108For example, terms 'participation', 'involvement' and 'engagement' were often used inconsistently and interchangeably across the literature, but can have vastly different meanings. 1This demonstrates a clear need for future research to consider consistency and intention in language used.This umbrella review was successful in consolidating findings from the published literature and presenting common methodologies and approaches.We did not exclude any reviews based on the RoB assessment conducted due to the nonstandard reporting required for qualitative research on this topic.We therefore acknowledge the potential impact of bias on the findings of this umbrella review.It is also worth highlighting that many reviews and studies reported on the involvement of CYP across varying age groups and in conjunction with representatives.It was therefore difficult to ascertain which approaches were applicable for specific populations.Reviews describing representatives were included if they were involved alongside CYP.However, this umbrella review did not focus on involvement of representatives solely as informants for CYP.There were also some barriers in inferring the level of involvement as this was not consistently reported.The findings on this topic were therefore limited by the depth and accuracy of results presented by the included reviews.

| CONCLUSION
This umbrella review identified consistency in the methods and approaches used, benefits and challenges reported and facilitators to support best practice involvement of CYP across research stages.It also highlighted important gaps in research processes and dissemination of findings.In particular, the need for consistency in reporting of PPIE, both in the terminology used and breadth of detail provided, to improve the quality, accessibility and useability of findings.Furthermore, approaches to involvement of CYP in research need to be better monitored and evaluated to demonstrate the impact on research and community outcomes.
years; n = 298; 65%).The overall mean age was 14 years (SD: 4.1; range 2-30).Parents/guardians/caregivers were the most common representative type involved in studies alongside CYP (n = 124; 60%).The number of representatives was only available for 86 (38%) studies, with a median of 16 per study.F I G U R E 1 Level of involvement of children and young people in health research.Adapted from the International Association of Public Participation (IAP2) Public Participation Spectrum 23 with influence from Shier's 'Pathways to participation' model.
Challenges and barriers to involvement of CYP in research were discussed in 25 (96%) reviews, often accompanied by facilitators to improve involvement.Several themes emerged including barriers and facilitators relating to meaningful involvement (n = 20; 80%), research commitment (n = 21; 84%), trust and partnership (n = 21; 84%), accessibility (n = 16; 64%), maintenance of engagement (n = 16; 64%), recruitment (n = 12; 48%), representation (n = 10; 40%) and conflict navigation (n = 12; 48%).These themes are outlined in Table Involvement often occurred at multiple research stages within one study, the most prominent being research design and data collection.Involvement in research design was most often through verbal methods such as focus groups, interviews or advisory F I G U R E 3 Stage of research involvement (n, % of studies with available data).Light grey bars represent combined results for involvement of CYP and/or their representatives (n = 469 studies).Dark grey bars represent results for CYP alone (≤24 years old; no representatives; n = 344 studies).Black bars represent results for children alone (≤12 years old, no representatives; n = 28 studies).NB: multiple selections possible.CYP, children and young people.panels/co-researcher roles, and more common when CYP were involved alongside representatives, perhaps due to the formal nature of these methods and complexity to aspects of research design.Inversely, involvement in data collection (contribution to the development of data collection tools and/or the conduct and implementation of data collection) was more common with CYP alone, through the aforementioned verbal methods, as well as creative visual methods like photography, video and/or drawing or active modes of expression (often used within a focus group or interview format).Regarding other stages of research, CYP (and/or their representatives) were least involved in data access and sharing,

F
I G U R E 4 (A) Overarching method types and (B) specific methodologies used for research involvement (n, % of studies with available data).Light grey bars represent combined results for involvement of CYP and/or their representatives (n = 600 studies).Dark grey bars represent results for CYP alone (≤24 years old; no representatives; n = 397 studies).Black bars represent results for children alone (≤12 years old, no representatives; n = 49 studies).NB: multiple selections possible.CYP, children and young people.

F I G U R E 5
Level of research involvement (n, % of studies with available data).Light grey bars represent combined results for involvement of CYP and/or their representatives (n = 259 studies).Dark grey bars represent results for CYP alone (≤24 years old; no representatives; n = 160 studies).NB: multiple selections possible.CYP, children and young people.

F I G U R E 6
Benefits of involvement reported to positively impact (A) the research study (n = 25 reviews) and (B) the CYP involved in the research (n = 22 reviews).% of reviews with available data.NB: multiple selections possible.CYP, children and young people.
14,Characteristics of included reviews. Invesgate how children with a disability have been involved as research partners; specifically, how they have been recruited, the practicalities and challenges of involvement and how these have been overcome and impacts of involvement for research, and disabled CYP.Investigate the paradigms and the discourses around research with or by children; what others are doing in the field and the challenges and the benefits of researching in this way.
T A B L E 1 T A B L E 1 (Continued) Abbreviations: CBPR, community-based participatory research; CYP, children and young people; NR, not reported; PPI, patient and public involvement; PROMs/PREMs, patient-reported outcome/experience measures; YPAG, young persons advisory group; YPAR, youth-led participatory action research.a Relevant source articles only, excluding publications within reviews that report on the same research study/project data.WYATT ET AL.